Hi

i had a similar visit 5 days ago, except I've never been through this before, I'm still waiting on CT as my lymph nodes were also affected 

I don't know how I'm meant to feel, I just feel like I need all the results now and the wait is excruciating 

I have a 3 week wait for CT due to coronavirus although I am on an emergency cancellation list

i would welcome any advice at all on how best to deal with this, I'm 43 and have 3 young children 

xxx

Hi

i had a similar visit 5 days ago, except I've never been through this before, I'm still waiting on CT as my lymph nodes were also affected 

I don't know how I'm meant to feel, I just feel like I need all the results now and the wait is excruciating 

I have a 3 week wait for CT due to coronavirus although I am on an emergency cancellation list

i would welcome any advice at all on how best to deal with this, I'm 43 and have 3 young children 

xxx

Hi AMil,

I am sorry to hear you are joining the club no one wants to join!! I think my advice would be to always try and remain positive. Medicine has moved on so much that breast cancer has a really high survival rate - in the 90%'s. Talk to people - friends/family or even us. I found that people who had been through/were going through BC had a better understanding of what I was going through but my friends and family were still amazing. Try and keep busy, between appointments. Waiting for scans/results is definitely one of the hardest parts!!! 
Remember, this is just a 'blip' The 3 of us all had very different journeys but we were there to talk about it and share worries and advice. Happy to do the same for you.

Caroline

Hi Amil,

I'm sorry to hear you have joined the club, or the family, as I thought of it when I was at the beginning of the cancer journey, but you've found the right place to talk about things.  

You are at the worst time of your new reality, and it's a scary time when you have young children. The waiting for results is the hardest part of the whole journey. As Caroline said keep busy, talk to people you feel are not going to be too freaked out by your news and try to stay positive, it really is just a blip, a few months of intense emotions and so many flipping appointments.  You don't know until you are affected just how many people have had breast cancer, some of them many many years ago. I was surprised to find several of my neighbours were all living perfectly normal lives after breast cancer and I couldn't believe how many people said, "My friend/ sister/mother had it about twenty years ago". In fact I began to think there was nothing special about having it at all! Not that I expect you to feel like that at this stage.

If you have read many of the posts from Caroline, Sam and myself you will have a good idea of the kind of things to expect in the future, all of which we have survived with our sense of humour intact, if not our bust lines. 

The three of us who have kept this thread going, and the people who have just popped in from time to time, have all had different experiences, different treatments etc but the three of us are feeling that we are near the end of the journey as far as our initial treatments are concerned. What the future holds, we don't know, but we are each in a position to know we will cope, as we have coped with our lives over the last few months. 

One piece of advice I would offer, is to ask if you are confused or worried or even if you disagree with anything you are being told.  Don't feel you have to accept what you are told until you fully understand it. It is your body and you are the person being affected by all this.  The doctors and nurses may seem to be a bit offhand sometimes, it's just because they have seen it so often and they know that you will probably be absolutely fine (if you do as they say) but they are not God and it is your right to question.  

Good luck with what's to come, it won't be half as bad as you imagine at this stage. Accept any and all help offered, keep your sense of humour, enjoy your kids. And if you need a rant to say things you don't want to say to your loved ones, this is the place to come, we all understand where you are coming from!

Christine xxx

Bionic Christine & Cool Caroline

Good to hear you are both doing well with Christine's new abilities to not ache and vault over buildings and Caroline's now frosty bedroom and husband who now resembles an Inuit.

I finally had an "event"!  Whoop, whoop.  It wasn't quite the event I wanted but still got out of the house somewhere nice, went to Wisley (RHS) which is near me down here, terribly middle class dahling but the plants are sooo lovely and the lovely Adrian made us all some scrummy sarnies (why do they always taste so much better when someone else makes them?  Probably as Adrian is not a tight ar5e who overloads them with fillings & butter..).  But of course it was Saturday when it rained all day, my hands were sooo cold, luckily I'd taken a scarf (more for if the sun came out to protect radiated skin!) so didn't get hypothermia but not being dressed for a Yorkshire summer didn't dint my enjoyment.  But by heck was I absolutely jiggered after 2 hrs of just aimless wandering!

So arm pit is still annoyingly red & sore (my friend says its my baboon's ar5e) still...its got to calm down at some point surely?  I never realised what a sensitive soul I am (ha!!), I blame those darn emotions (again).

I've also discovered this morning that some evil insect has bitten all over my neck, looks like a vampire tried to induct me into the clan last night...think I may have to de-flea them cats...

Am glad that your kids are so overly protective Christine, they'll have you living till 100+ whether you like it or not! Admittedly it may involve literally wrapping you in bubble wrap for a number of years in an oxygen tent! How many face masks have they bought for you?  Adrian bought me one but haven't needed it yet, doesn't mix well with my lip gloss!  Its so disgusting when I take the ones off that are given by hospital and they're covered in foundation...they're like a mini Turin shroud after I've done with them.

Can I ask - do you both still do the post surgery arm exercises you were given? My BCN tells me I still should do them 3 times a day which sounds a tad excessive as my mobility is great, she tells me its more the higher risk of lymphodema (given ANC) but 3 times a day! 

Just as well I chased those bisphosphonates as had slipped through the net, chemo ward was waiting for BCN referral and BCN were sending me to chemo ward...love going round in circles!  Anyway hopefully should have first one with zolodex at beginning July (think my veins are ok now thankfully) so that will put me out of action for a week or so and then should be fit to go back to work in some capacity (boo!).

Christine- like you my sister is very arty and she did some lovely (abstract) big pictures for me about 15 yrs ago but as she has no sense (its a genetic thing) she put on that much oil paint that they took about a year to dry - what an idiot eh?  Anyway they now adorn my living room & bedroom, love the individuality of them...and the fact that I didn't have to pay shop prices for them of course!

You'll also laugh that I entered a raffle recently and won some cushions!!  Still determined...

Alison - if you're still following hope our messages helped and that one of those CT cancellations came through.

Right stay safe ladies.

Sam X

Hi Sam,

I don't know how I missed your latest message. I only came on today to have a whinge!  My appointment for July 8th which was supposed to be my very late six month check up has been relegated to the telephone again! I'm a bit p'd off because this appointment was made after the previous cancellation in April.  
I'm sorry you are still having problems with your underarm, I'm afraid that might last for a while. I'm not sore under there now, but all round the area feels tight and uncomfortable and there is a spot in front, where my swelling starts that is still tender. 

I'm happy about being able to have a support bubble with my daughter now.  She has been bringing my shopping and we have had conversations at the social distance but it was lovely to be able to hug her again.  She came for Sunday lunch and it felt lovely and normal to be able to sit indoors and just relax.  She hasn't bought me a face mask because she has no intention of letting me out into the big scary COVID world!  However, I was very surprised, last week to receive a  hand written letter, who does that any more? It was from the cousin who commissioned the double portrait, she is a very clever sewer (person who sews, not drain pipe!) and she had sent me two masks that she made for me! Her mother who is my friend is already venturing out with her mask on.  I was talking to the mother yesterday and she was really going mad with the lockdown as they live in a very isolated position with no neighbours to chat to over the fence so she was desperate to get out again.

I have to admit I'm not still doing the arm exercises, although I still do the lymphoedema exercises for my boob.  My arm feels tight from underarm halfway down to the elbow but my range of movement is perfect. I still massage the arm sometimes, when I think on.

Good luck with the bisphosphonates, I refused them because the prediction only gave a 1% improvement in my survival rate, which didn't seem worth it for the possible side effects, at my age. Are you having the infusion? My friend had one after she broke her hip, and she felt really ill for a few days afterwards, but she's fine now.

Will you be able to go back to work, or will you work from home?  My daughter is an accountant in an educational trust and has been working from home since lockdown and they may decide to continue this after normality comes back because the central office building they use costs a lot of money and the CEO is conscious of the cost while no one is working there. As the adaptations to the schools in the trust will be very expensive to ensure the children's safety, he may decide to lose the central office.  My daughter is hoping they do because her migraines have reduced considerably since she doesn't have to drive in to work every day and she gets far more work done now there aren't all the interruptions you get in an office. 

I did laugh when I read about your raffle prize! Determined? Ha! No chance!

i think I'm going to try and change my profile picture, if I can remember what to do.  I am really happy with my painting of the Heeland Coo, so I want to share it. Everyone who has seen it says they love it, and I love it, not for the fact I painted it, but because it's a happy scene.  I can't remember where I got the reference photo from, but it made me smile. I'm working on a new portrait of the dogs, only the two now, not two and a half! I have found the wonderful Alkyd oil paints that dry quickly, so I won't have to wait forever for the paint to dry.

Hi Caroline, if you see this! Hope you are ok.

Christine xxx

Christine
You didn't miss it as you've just answered!! You'll be glad to know my armpit is a bazillion times better, although the lack of skin soreness means that the underlying discomfort is now noticeable again!  Ha!! This could partly be due to the fact that I may have (!!) overdone it on Monday's barre session with tricep exercises (no blummin weights though- how rubbish is my duff arm??). I do however think that the area below my armpit and seroma below are still creating some discomfort which is annoying but does not stop me doing things (though am still tentative about lifting heavy stuff, like a big bag of compost).

Its so annoying when these after effects hang around isn't it?  If things like the above & your lymphodema would bugg4r off we'd all be much better for it eh?

All splendid here, even went to visit my old dear near Caroline, in the New Forest, last week, told her she wasn't allowed any hugs ( I don't want to get all Typhoid Mary on her) but I was more than happy for her to feed me - did I mention that I am an accomplished glutton? Good to see her, and abviously made her week by talking at her for 3 hrs (think she needed a lie down afterwards, never mind my needs).  I must say it was a delight to see the M25 so well behaved, I don't think I've seen it like that even on a Sunday for over a decade.  I'm glad your bubbling with your daughter, makes like better and easier all round, I have 50% of bubble with mother now sort of and 50% with the boyfriend...am not sure that's how its supposed to work but that's my take on it!

I do think that hospitals are using the cv 19 impact as an "excuse" to do what they want to to make life easier for them without any thought of what the patient may want or need, can you request a (masked) face to face meeting?  May be worth a go...

Just noticed your new pic (even before I read about your foray into figuring out how to do it - and well done!) and determined that either Archie has been eating things he shouldn't have (again!) or that's one of your new creations, looks very impressive...and this from someone who has never had an artistic cell in her body...I like!  I used to live near some highland coos and they used to scare the pants off the boyfriend at the time...and that was why the great idiot had to go...

Year re the bisph's its the infusion, am mainly doing it to save my osteopenic bones from the naughty letrozole but also good that it can prevent bone cancer, if I have any bad ongoing side effects will re-think things.  Am planning to feel poo afterwards with flu like side effects and then am actually planning to get my lazy bum back to work...about time too!  Am "lucky" in that my office is old and rammed full of people so will be closed for remainder of this year as no chance of achieving any sort of social distancing so makes my very phased return to work even better so hurrah for that!  Will miss some human interaction with work pals though, and the chances of technology not proving to be a real pain in the missing boob are mimimal!
Suspect that thoughts at my work are very similar to those in your daughters office...time will tell, I don't really mind either way as long as I can pay bills and ensure those cats remain overweight.

Managed this morning to book some National Trust tickets for weekend after next - what an annoying system, the RHS one is far easier...looking forward to getting out & about some more. Am amazed that I wasn't too bad with the daft weather today, I think being nuked recently and having stupid hot flushes has acclimatised me to 30+ degree temps, I do hope I'll be able to get some quality sleep later...

Hope all is fine with you & Caroline (Caroline - don't work too hard, its too hot!!).

Sam X

Hi ladies,

Good to hear from you both!! All good here. I had a 6 month "holistic" follow up call yesterday. When I had the first one, after my radiotherapy I poo pooed it and told them I was fine. This time I really appreciated the call. They had sent me a sheet to fill in, highlighting any thing I was worried/distressed about - practically, family, emotionally, spiritually and physically. Call lasted 30 min and she has recommended that I make use of some of the local charities that offer therapies like reiki, massage, aromatherapy etc. She is also going to contact the breast unit to see if I can go for a physical check up before my next appointment, which isn't until October.  
Life is carrying on as normal - I've got a hair appointment for next Saturday at 9am and I can't wait!! I have my hair really short and usually have it cut every 5 weeks so it's desperately in need of a trim!!

Work is work. Our holiday in August has been cancelled. I wasn't surprised. We were due to go to Florida but their COVID rates are very high at the moment so probably best we wait until next year. Hubby wants us to go away in a camper van - can't say I'm thrilled about that as I hate camping of any kind!! 
I'm interested to see if opening bars etc is going to push the Covid infection rates back up. I for one, won't be going out and visiting them!! Cheaper and nicer in my garden!! 
Anyway, off to see a friend, in her garden so hoping the rain holds off!! 
Take care and stay safe xx

Caroline

Good to hear from you.  Is your holistic call part of the OAFU (open access follow up) program?  People talk about this as if its a nationwide "scheme" we're all in but I'm not convinced until I have collected evidence! So do you get a chat/meeting every 6 months? I guess that makes sense as my first OAFU meeting is 6 months post surgery, hadn't thought about how often they'd be after that though.

Presumably you've had your annual mammogram by now?  Got mine at end July, comes round quickly.

I encourage you to take advantage of the complimentary therapies on offer, during chemo I had all of them via MacMillan and their were all really welcome, I particularly enjoyed the reflexology (love having my feet pampered) and also the reiki (enjoyed it as the woman doing it actually told me to shut up so had a rare opportunity to stop gabbing and relax!).

Crikey, how did you manage to be first in the hairdressers, that is very impressive or your hairdresser has decided you are most in need - either way well done! I'm thinking of going silver as I wouldn't mind my grey if it wasn't so salt & peppery and silver will be beneficial when roots start showing...prior to losing hair was strawberry blond and am bored with that now, want something fierce!  Pity the poor hairdresser with all these curls though...he'll be earning his money..see him the 9th so not far behind you.

So that's at least 2 holidays that I know of that you've missed so far...hope you got refunds for both of them. 

I have 2 holidays planned so far. In July plan A is to visit a pal in Southern Ireland but as there's still 14 day quarantine there if things don't change plan B is a trip to the motherland to see pals & family and then August had planned to go to the Edinburgh fringe, think we'll still do Edinburgh (drive up with stop off in Yorkshire) but no fringe unfortunately, got a lovely apartment booked so should be fun.  Don't think I'll be going "abroad" any time soon, the flying set up doesn't fill me with joy plus if I was a local and heard an English accent I'd avoid me, we've not got a good reputation in terms of the lurgi have we?  Like you say it will be really interesting to see what happens in pubs & restaurants the following week, like you I'll sit on the sidelines till we see how things play out...I do still think a lot of people will be doing gardening entertainment like yourself.

Busy week this week with blood test Tues and zolodex and bisphosphonate gunk Weds, don't think I've been so busy since radiotherapy, how will I fit all my usual fannying around in the week??

Am getting more annoyed that my under arm is still quite sore and is worse when lift arm overhead and am not sure if BCN is fobbing me off telling me that's normal, Christine any thoughts?  Its not stopping me doing anything, am not yet lifting heavy stuff or weights as don't think I should but that's about it.  Never do much hoovering or ironing so deffo not overdoing either of those, in fact one of the doors in my house has that many clothes awaiting ironing on it they now have cat hair on the bottom of them and there's a risk the hinges may fail!

Had a good day out yesterday (and making the most of the boyfriends national Trust membership) at a local arboretum, love a good tree collection!  Not too rainy and not too hot or sunny - ideal, and did't even mind a wet bum post picnic (delish corned beef sarnies with lashing of horseradish...only the quality meats for this northerner)!

On the subject of work have my occ health meeting tomorrow, know what I want so let's see how we get on eh?  Very keen not to work too hard!  Wouldn't class myself as lazy at all but need time to fit all the stuff I want to do into my day and will be putting me first from now on, well that's the plan anyway....

Have a good week

Sam X

Hi Girls,

i was interested to read about the holistic telephone call and the open access follow up programme because I have never been told anything abou them  or about complimentary therapies.  I imagine that the call I am expecting at 8.45 next Wednesday morning must be part of this but it has never been given a name.  

 I had good news last week in the form of a phone call from the lymphoedema nurse to say my laser treatment appointments had been arranged, starting on the 13th of this month - how the heck has it got to July already? - four sessions of 45 minutes each, Mon/Thursday for two weeks. 

Sam, my arm isn't really sore and it certainly doesn't stop me doing anything, although if I do something very strenuous I do get pain in the muscle, I think the pectoral, which tightens right up into my armpit and feels like I'm trying to get into a sleeve that's three sizes too small for me! The tightness is noticeable sometimes more than others.   It is still early days for you, though, and you had more nodes taken than I did so I suppose it's going to take longer to heal properly. It's a good job mine's not too bad, now, because last week my bed collapsed and I had to lift the whole weight of it up with my bad arm so I could push it back together with the other.  Yesterday I built a flat pack kitchen unit, too and it wasn't painful at all. Although I am right handed so did most of the work with the good hand.

I hope you're feeling ok after your bisphosphonates infusion today. Are you ok with the Zolodex? It feels like a long time since I had to keep all those hospital appointments, My mammogram is in September but I forget what date. I'm just assuming everything will be ok. 

I feel quite smug when it comes to hair because I do my own. I have cut my own and my family's hair since the 1970's when a girlfriend who trained with Vidal Sassoon taught me the basics of keeping short hair neatly trimmed.  My kids didn't like me cutting their hair as they got older but both my exes were very happy to save money on going to the barber. When we lived in Jeddah, Saudi Arabia, all the barber shops were closed down for a while as one was caught out, acting as a cover for a brothel, so I had a regular line of my husband's colleagues popping in for a trim.  I should have charged for my services but didn't.  I wear mine very short, too, Caroline, and it does need trimming very often, so I just set up mirrors at various angles in the bathroom and hack away. My premise is that hair grows so if I make a mistake it won't show for long!  I went grey very early, in my twenties, so I coloured it for years and years, going from my natural, dark, brown in my twenties and thirties, to an ash blond in my forties and then at 56, I decided to stop colouring it and it has been pure white for the last 17 years. I have never thought of using a silver colour, Sam, although I've just seen an advert for a silver shampoo!

I actually ventured out to the shops last weekend!  I needed petrol, which was my excuse for going out and the impetus for actually going, was my neighbour offered to get something from Aldi for me but by the time I had listed all the things I wanted I couldn't bring myself to ask anyone to seek all those things out.  I went fairly early on Saturday morning and there were no queues and few shoppers at first, but as I had a real good mooch, buying things I didn't even know I wanted, there were lots of people queuing to get in as I was leaving. 

Take care, stay safe

Christine xxx

Hi ladies!!

A holistic assessment should be part of your recovery programme - www.macmillan.org.uk/.../recovery-package

Christine - I am very impressed with the fact you had to reassemble your bed!! And your hair colour journey sounds just like mine!! Found my first grey hair at 21, dyed it red/auburn/red black throughout my 20's and 30's. I decided to go lighter in my mid 40's as was sick of my badger stripe needing regular attention, so gradually went blonde. I dyed it the other week and it is currently a very white/blonde!! I have attempted to cut it - mostly around my ears but am worried about making too much of a bodge up!! Only 3 days to go!! I did cut my kids hair when they were younger and have been barber for kids and hubby during lock down. 
Just been out for a run but seem to have surcome to a hip/knee pain so ended up having to walk home. I feel like I'm a barrel of aches and pains at the moment!! 
I don't have my 1st annual mammogram until October so quite a wait!  I am hoping, after my assessment, they try and fit me in a bit earlier, especially as I was actually diagnosed in July/op in August.  Not sure if I have any more holistic assessments - but she did give me her contact details and said I can contact her whenever I wanted.

Right, off to dump my trainers and get my pjs on. 
xx

Hello ladies
All good here and am now pretty much recovered after naughty bisphosphonate gubbins floored me this week.  Strangely enough though, and it has come at the same time as a change in letrozole brand, my aches & pains now seem to be significantly better...am not sure there's generally good side effects of any drug so will just put myself down as being a medical miracle.
I did have a lovely time though at the chemo unit on Weds, and though the zolodex & bisph's only take 30 mins was there for 90 mins as was having so much fun with (poor) fellow patients and the very funny nurses.  I think that all involved are more than happy that they only get to see me once a month! And I don't think I get any side effects from Zolodex Christine but they could get mixed up with letrozole side effects as been taking them for broadly same time.
So its sooper Saturday, I bet Christine was out at 8am at her local Wetherspoon's eh? Ha!  Mind you with your furniture building ability a job helping out Ikea buyers beckons (agree with Caroline very impressive).  I live opposite a quiet boozer (its a well behaved one) and its very quiet though the locals are very good at making believe that 100cms is the same as 100mm ...I won't be popping out to pubs/restaurants any time soon and will be still insisting that the cats place their food orders via post-it note.  I don't know anyone who is planning or who has actually braved the newly open leisure sector today, do you?  Am sure many, like me, are waiting to see what ensues...
So am going to be fighting fit tomorrow (I've decided so it will be so) and go, just for a change, for a bike ride.  And then next week is full on busy, 2 trips to the hairdressers (yep its that bad!  Actually one is a patch test) and 2 meet ups with pals.  Back to work 14th for a few days before a holiday oop north back to the Motherland...hard life for me eh?

Like Caroline I was grey from early 20s ( it could have been worse, my father & brother were bald from late teens!) but I've never, until now, "embraced" my natural hair colour, its been an experience...but one that will be finished next week! 

Glad your laser treatment is but a week and a bit away Christine, reading about it it would appear to be quite straight forward, hope so & obviously hope it works, presumably you'll only know a while after when the build up starts breaking down?  Do let us know how you get on.  Re my arm/pit soreness, probably not a coincidence but not having done ANYTHING for the past few days had resulted in a much improved area...which although I have quite clearly noted there is no stopping my exercise so will just have to stop moaning as its most likely all self induced!  Although I exercise I would not lift a bed though!! Christine-does your daughter know? Mmm?

Christine you do have an interesting past and more than one string to your bow, I was never meant to be anything more than a one trick (and simple ones at that) pony.  Think your hair is like my mothers (the one near Caroline), her's would be pure white if it wasn't tinged with nicotine (nice!).

Caroline - give the mammo dept a ring as seems so odd (and I know there's discrepancies all over re consistency of BC treatments) that we were both diagnosed same time yet you wait.  The worst that can happen is there's a good reason (can't imagine what but you never know) why its later than mine and they can hopefully tell you why.  Impressed with the running, especially late(ish) in the evening, if i don't do exercise by 5pm at the latest it doesn't happen..any impetus I had has departed for the day.

Right time I had my first shower in 3 days (nice!), boyfriend is popping by to check am still in land of living (and to do 3 days washing up...he isn't aware of the latter yet!).

Hope your weeks are as thrilling as mine promises to be!

Sam X